tonight on "nightline," deepest cut. an excruciating decision for parents. their infant suffers seizures that threaten his young life but the treatment is a radical surgery to remove half the brain. "nightline" follows them from decision point to recovery. beyonce unplugged. on her latest world tour she took off her makeup turned on a camera and recorded a string of candid videos for her directing debut. >> why did god dive me this life? tonight, beyonce tells us all, about life on the road her marriage to jay-z, and those baby rumors. >> you don't have anything you want to tell us, do you?
>> announcer: from the global resources of abc news with terry moran, cynthia mcfadden and bill weir in new york city this is "nightline," december 30th, 2010. >> and good evening to all, i'm bill weir. parenthood, by definition is about sacrifice. any self-representing mom or dad will give up sleep, savings or their own life for their kid. but imagine having to put your baby's life at risk in order to ease his suffering? we begin tonight with the parents forced to make that unfay thomable decision and brian rooney was there for what happened next. >> there we go. >> reporter: this is evan stauff, a handsome happy baby who is about to be 1 year old. his brothers are fascinated with him. >> you're getting your brother, huh? get those legs going. >> reporter: evan makes plenty of noise but his language
development is a little delayed and he has trouble moving his right arm and leg. >> he was born i thought, much stronger than our other two sons, when they first started to develop. we kept saying, wow, he's really developing quickly. >> reporter: but evan's rapid development abruptly stopped last april 1st. an irony his family always mentions april fools' day. >> he was laying in the bed having a seizure. i asked david to turn the lights on. >> they used a cell phone camera to take video of evan that morning. >> hey there. his body was rigid. his breathing was shallow and fast. >> reporter: they rushed him off to their doctor. from there to the hospital. and though they live on the oregon coast ultimately, to the office of dr. gary mathern in los angeles. >> it's almost like he's reacting to a hiccup. >> that's a term that's actually
been used with these. hiccup-like seizures. see, they go again and again and again. >> reporter: evan was having waves of seizures maybe even hundreds every day. he was diagnosed with something called infantile spasms. >> the eyes shoot over. he knows his discomfort. does it again. the eyes shoot over to the left. seizures, in the first couple of years of life, when your brain groems to 80% of your adult size, are particularly devastating to development. >> reporter: he might have grown up unable to walk or talk. and the seizures were constant. other the summer the stauffs continued to record them on video. and log the numbers. they tried medication but evan's seizures continued. at home in november and at the doctor's office. as a school administrator versed in special education, kathleen knew evan's problem was serious. >> there you go.
you had just a couple here. you're okay. >> reporter: a coast guard veteran who once worked on rescue boats, david quit his job to take care of his son. they soon heard about dr. ma mathern, who specializes in an amazingly radical surgery called a hemisphere exmy. he removes or disconnects half the child's brain to stop the seizures. >> the risk to this child for death and severe morbidity from the seizures is actually greater than the operation itself. >> he likes that wedged feeling and he likes the window. >> reporter: you would think this would be a wrenching decision for any parent. removing half their child's brain. but by the time the stauff's met dr. mathern, they knew this was it. >> i told him thank you for being as honest and straightforward and just willing to say, this is what it looks like. good, bad, ugly this is what it
is. >> it may seem very radical, but at the same time it was so practical for evan. it will kill him. it's worst the chance. >> reporter: dr. mathern identified the problem in the left side of evan's brain. >> you can see the difference in the shape of the left side compared to the right. >> where did that momma go? >> reporter: by early november the family prepared for the operation. and prepared for it to do some damage damage. vision impairment and loss of motor control on the right side. >> aw. that's okay. that's all right. when he's 1, his right eye will just be blanked -- >> like off to the side. he won't see anything. we'll still love him. >> i don't care if he can't ever walk a straight line or move his arms above his head. just to say, there's my brother, that's my dad, and, hey, mom, that, to me is huge. that is huge.
>> reporter: despite all the science, the brain still holds some mysteries. dr. mathern is not always concern certain that he's targeted the right side of the brain. even so, the family collected before dawn for the surgery on november 23rd. >> you can't waste time with this. you know, every day is another day lost. >> reporter: the doctors went to work at about 7:00 a.m. and they were inside evan's head all day. family wondering whether the surgery would work. whether evan would live. >> you just don't know. you just try and pass the time you know doing anything and to try and think about something else. buff you can't. >> reporter: it took 11 hours. >> you look pretty good for a little guy that just had half his brain taken out, huh? you want to grow up and be an answer near? you want to grow up and be president? okay, that's good. >> we haven't had any seizures and he's smiling and just
getting back to normal. he responds -- oh there's a little crooked smile. >> reporter: evan came out of surgery seizure free, but how do you live with half a brain? he lost the side that coms speech. >> there are certain functions in your brain that you can shift from one hemisphere to another. language which is 98% of people is on the left side, can be moved to the right if you operate early enough. >> reporter: what about iq? >> iq varies. and this depends on a couple critical factors. one, that you stop the seizures early enough. two, how good is the remaining hemisphere? >> reporter: and what about personality? does that change? >> i've taken out right hemispheres, i've taken out left hemispheres, and the kids come out with the same personality that they had before. >> reporter: now evan stauff is bright, aware, and chattering. >> i don't know if he's having a great day or what but he just seems so naturally happy. >> that happiness is just like, oh, gosh, you know i -- i feel
so much better, let me just tell you about it. >> reporter: it's not possible for this operation to result in a completely normal child. but now, five weeks after surgery, evan has a shot at a good life. >> to move his legs like he is and his arms to wave them around, and to speak, you know is just remarkable. it's incredible. >> reporter: everan and other children who undergo this surgery will have some limitations, but it's possible that one day you could meet him and never know that he has just half a brain. this is brian rooney for "nightline" in north bend, oregon. >> so beautiful. thanks to brian rooney for that report. when we come back, beyonce hot off her latest world tour the "single ladies" star sits down for an exclusive interview and talks about her dir rector y'all dedebut.
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wwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww beyonce knowles has sold more than 100 million albums since her destiny's child dales and she ranked number nine in this year's list of the most powerful women. but she continues to stretch her talent in unexpected directions. fresh off her "i am" world tour she tells cynthia mcfadden about sliding, for the first time into the director's chair, in this "nightline" encore presentation. >> reporter: this is the beyonce
we've all seen. ♪ she's always loved to sing. and she's been famous for it since she was 17. the breakout star of destiny's child. their first hit, "no, no, no." ♪ no, no, no ♪ >> reporter: as a solo artist in 2003 she topped the charts with "crazy in love." ♪ crazy right now ♪ >> reporter: now, at the ripe old age of 29 a fresh off a year-long world tour beyonce is clearly at the top of her game. ♪ and while touring, the famously private superstar made a stunning decision during her quiet times on the road she would turn a camera on herself. and let the rest of us see the real woman behind the star. without makeup without lights unplugged. >> and i'm flying home. because i miss my baby.
i feel like i wanted the fans to be able to see what i see. it's a lot of things that i revealed about myself that i would have never given to a different director. >> reporter: so, what we see are some very tender moments between you and you. >> definitely. >> reporter: what was the hardest one to show the rest of us? >> well, there's one moment i remember being in china and i was in this huge suite and i looked out of the window and it was just thousands of people walking and i couldn't believe my life and i just -- i guess was a bit lonely and i wanted to talk to someone, so i opened up my computer and i just talked. >> why did god give me this life? sometimes it's overwhelming. why did god give me my talent my gift, my family?
but i know you're not supposed to question god. >> reporter: so, what's your answer? >> i can't answer that. only god knows. and i don't take it for granted. i see in the moment how amazing the opportunities are. i used to not do that. i was -- i think i was too young. and now i know, you know when a win six grammys in a night, to really soak up every second because it's something that can never happen again. and before i wouldn't go to the pyramids or i wouldn't go jump in the red sea or i wouldn't go to the great wall of china, but this time, i can appreciate how incredible this is and the history, and i try to live in the moment. >> reporter: she's put some of those raw moments into a film she's directed about the tour. listen to what she says while wearing one of the costumes from the show. >> it's going to be almost nine days without resting my voice and my body and my mind and i'm just really upset that i don't have anyone that's concerned
about my body and my well being. >> reporter: you're saying you know i perform nine nights in a row. nobody cares about me. >> yeah. >> reporter: does it feel that way sometimes? >> i was delirious and i just was feeling sorry and bad and i was, like you know i need rest, i need someone to say "stop." in the end i cried because, clearly, i'm a human being and i bleed and i hurt and i fall and i cry just like everyone else. i'm here on the couch, in my sweat suit. with a very sweaty face. eating potato chips. i want a pickle and pal peen owes. >> reporter: this is how i ate when i was pregnant. you don't have anything you want to tell us, do you? >> no, no i don't. and this was shot a long time ago. >> reporter: so there was nothing then there was nothing now -- >> nothing now no. it will be one day. definitely one day. >> reporter: you're 29. you got plenty of time.
>> i'm like i'm 29, guys. >> reporter: i'm wondering -- i know how close you are to your mother. and i'm wondering if you have given any thought to the kind of mother you'd like to be one day. >> definitely. my mother -- it's one of the reasons why i haven't had a child yet, because i feel like you know there are certain things that i wanted to do before i had a child, so i can really, really focus on being a mother. and i'm getting closer to that point, but i -- i mean i still am in such a great place in my career that i feel like i want to wait until i'm really really ready. >> reporter: why do you think people are so fix sated on this? in preparing to sit down and talk to you, it's just about every 30 days there's another rumor that you're pregnant. >> it is. and one day i will decide to have a child and i want people to be excited and they're going to be like lord, okay, whatever, she's been pregnant 25 times. >> reporter: her husband, is of course, the rapper jay-z, who
makes a surprise appearance with her in london. how did that happen? you two have done a lot to keep your careers separate. >> it was great. he happened to be in london and he was actually working on his own stuff and kanye was there in london, and i said oh this is perfect. this is my first time directing a dvd, would you guys help me out, help a sister out? and they came through. >> reporter: when we come back, this is one performer who doesn't need any help when it comes to tough decisions. >> and you dare say -- no let me finish talking. this is not working. got three more days. if your racing thoughts keep you awake... sleep is here, on the wings of lunesta. and if you wake up often in the middle of the night... rest is here on the wings of lunesta. lunesta helps you fall asleep and stay asleep, so you can wake up feeling rested.
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wwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww >> announcer: "nightline" continues from new york city with bill weir. >> and we return now to cynthia mcfadden's conversation with beyonce. "nightline" first interviewed her four years ago, at 25. she was enormously talented and beautiful and savvy. now at 29 she is all of those things, but more open vulnerable, as well. and she says she's comfortable taking the reigns of her own career and her own life. >> reporter: superstar beyonce's new documentary takes a look at her personal sometimes fragile side, as she travels around the world on tour. but it is also a glimpse at another beyonce. >> we're on our way to my first tour rehearsal. >> reporter: hard-charging, in control. >> i'm not going to half-do a performance. it's not an option. the lights look very cool.
heavily involved in managing her own world. >> just corny looking. doesn't look real. it needs to look raw and like really like if y'all took a camera out and look up and you see the stars. >> reporter: we do see you -- you're not -- you're not a pussy cat. we see lots of no no no. >> no, let me finish talking. this is not working. when it comes to my business and my work i'm very protective. i know you know. and i have my bound riparyies and things that i feel like at this point, i've earned the right to have standards and i don't bend on them, at all. >> reporter: so, do you worry at all that people just want to please you now? >> i don't want those people around me. you know the second that happens, your videos start looking a little crazy, you know, your music starts eventually is going to catch up with you.
>> reporter: so, you want people to talk back? >> i want people to be respectful and have constructive criticism. i like to be people around that are really good. if something is wrong, then i'm definitely going to try to make it right. >> reporter: to give viewers an idea of just how picky you are, the box of applications for the dancers -- >> yes. >> reporter: yeah. ♪ i mean you look at the dancer they all look good to me but nope next! you were very fussy about hiring the dancers for the show. >> i need dancers that are going to dance better than me. >> reporter: so, you're not threatened by having people around you who are -- >> i want to be threatened. i want them to push me. >> reporter: the perfectionism often made brutal days on the road even longer. >> no, no. i'm seeing -- in the intro -- every night, i had a ritual. i would watch the show and --
>> reporter: after performing for two hours, you would sit and watch? >> i watched the line cut. because a lot of people who don't have great seats, they can't see details so you have to make sure the camera is filming the right shot so they can really experience it. also, because i knew i would be directing, and i could get a head start on the editing. >> reporter: you can load the edit board. you're not having somebody else come in here and cut this. >> well i can run final cut pro but i prefer not to. i usually have someone doing it. if i have to do it i come in jump in. but i would rather someone else doing it. there's a lot. as you can see, it's a lot of different tracks -- it's too much for me. ♪ all the single ladies ♪ >> reporter: she may still be getting her sea legs as a director, but making a hit song like "single ladies" is old hat. during the tour, beyonce held a contest to highlight the copy cat dancers.
♪ don't pay him any attention ♪ >> reporter: i couldn't help but want to get in on the act. >> kind of pop it a little bit. >> reporter: pop it. okay. pop it? >> you bring your hand real stay cat coe, like stick it. ♪ >> reporter: i'm great. >> she's got it. you did a great job. my single lady. >> reporter: there you go. i'm wondering. i look at madonna at 50 on the stage, i look at cher at more than 60 on the stage, she's about to go out on tour again. are we going to be seeing beyonce at 50 and 60 out there shaking it? >> i'm not sure if it will be shaking it. it will probably be more like ave maria-ing it. ♪ ave maria ♪